Unexpected Emergency Room Visit

This has been an interesting night. Andrew woke up a little before 2AM vomiting in his bed. His temperature was 99.5, but within half an hour it went up to 102.8. We contacted the on call hematologist/oncologist at U of M, and she advised us to go to the nearest emergency room. She called ahead to Troy Beaumont, and they were ready for us before we got there.

They drew blood and did chest x-rays on Andrew. The blood counts came back fine(the white blood cells were even elevated), and the x-ray and examination were normal. They did a couple of blood cultures that we will find out about tomorrow. The nurses gave Andrew an anti-nausea medicine, an IV antibiotic, and Tylenol and Motrin for his fever. Around 6:30 the fever broke, and he was discharged a little after 7.

The doctors think that it is probably a viral infection, but it could also be due to a variety of other factors, such as remnants from the respiratory infection he had this past week, the flu shot booster he got this morning, or an infection in his line from when it was accessed Friday.

He is upstairs getting some sleep. Hopefully the antibiotic will take care of whatever the infection was, and he will be fine to go trick or treating around the block tonight.

Today's Hospital Visit Not What We Expected

We went into today's visit at U of M Hospital expecting for the doctors to start reducing Andrew's cyclosporine dosage to begin weening him off of his medication. This is what Dr. Walkovich told us would happen at our last appointment at the beginning of the month. Since then, however, she has done more research on cases similar to Andrew's, and has decided that it would be better to keep him on a full dosage of cyclosporine until his neutrophil count is self-sustained(without use of neupogen) above 1500. Once his neutrophil count stays at that level, they will consider Andrew to have fully recovered because his platelet, hemoglobin(red cell), and neutrophil(white cell) counts will all be in normal ranges. Dr. Walkovich said that, in cases of cyclosporine reduction without full recovery, there is a high rate of full remission that may occur. Conversely, her research lead her to believe that the side effects from prolonged exposure to cyclosporine weren't as bad as she first thought. She even cited a kidney transplant patient who had been on cyclosporine for 12 years and had no major side effects. So they will keep Andrew on the same cyclosporine regimen he is on now until his neutrophil count rises, and, from this point forward, they are monitoring Andrew for any side effects from the cyclosporine.

The doctors also decided to try taking Andrew off neupogen and test his natural neutrophil production again. This is the third time are trying this. The first two times, his neutrophil level plummeted, but they feel his body may be producing more now than it was then. Since it take 10 days for all of the effects of neupogen to wear off, and he got his last injection Wednesday, we will do a lab draw next Monday, November 8, to see where his neutrophil production is at. Because there is a chance that this production will plummet again, we need to pull Andrew back out of school next week and until we get the lab results back. If the lab results are good this time, he will go without neupogen and try to fully recover. If they are low again, he will go back on neupogen and we will try again later. Either way, he will go back to school. This absence should be more temporary. Hopefully he is producing neutrophils at a level where he can be done with injections permanently.

Andrew and Madeline wore their Halloween costumes to the hospital today, and the child life specialists took all of the kids in the child infusion area trick or treating around the hospital. Different departments gave the kids different gifts and toys. One man in the adult infusion area who was there with his wife even started passing out dollar bills to them. Pirate Andrew and Princess Madeline had a blast.

Andrew's test results

Andrew started his second week of school. He loves it! He has really enjoyed seeing all his friends and his teachers. On Tuesday, Andrew had a lab draw at Beaumont. We recently received his test results. His platelet and hemoglobin levels are still in normal ranges, and his white blood cell count and neutrophil count dropped slightly from last week. His white blood cell count is at 3.1 and his neutrophil count is at 2000. The doctors want us to continue giving Andrew two doses of neupogen each week. He goes back to U of M to see the doctor at the end of the month.

Andrew is back at school!

On Monday, Andrew was able to go back to school. He was very excited! Here is a picture of him standing outside of Living Word Lutheran School.

Moving On to the Next Phase of Treatment

Andrew had a lab draw at U of M Hospital today. His numbers were similar to other lab draws he has had 2 days after neupogen(he had an injection Wednesday evening). His platelet and hemoglobin levels are still in normal ranges, and his white blood cell count and neutrophil count were elevated by the neupogen(4.0 and 3000, respectively).

We then met with Dr. Walkovich. We talked about long term plans for Andrew's treatment. They are pleased with Andrew's progress so far, even though his stem cells haven't started full production of white blood cells yet. The doctors are also concerned about the long term effects of giving Andrew full doses of cyclosporine for more than six consecutive months(he has had it for about five so far). Therefore, they have decided that they will start weening him off of the cyclosporine beginning with his next hospital visit on October 29. The expectation is that, as the cyclosporine level in his body reduces and more t-cells are produced, that those t-cells will no longer attack the stem cells in his marrow that are producing blood cells. They will ween him off of cyclosporine very slowly, probably over 6 months or more, to help to keep this from happening. If he is weened completely off of cyclosporine and his body is still producing normal levels of blood cells, the overall treatment will be considered successful.

Because his body is still producing less than normal levels of white blood cells and neutrophils, which are a type of white cell, he will continue his routine of two neupogen injections a week to stimulate their production. Long term, the doctors are going to monitor his numbers, and when they feel like he may be producing more white cells naturally, we will probably suspend the neupogen and see where he is at. This will be a trial and error process. The doctors aren't concerned with long term effects of using neupogen, especially in the extremely small amounts he is getting it(.05mL twice a week). Also, there is no diminishing return on successive neupogen injections like there was on successive transfusions, so it should work the same no matter how long he takes it. There are people who need to take neupogen daily for years, so there is little danger of him continuing with it going forward. Ideally he wouldn't need it by this point, but doing it this way has fewer risks than continuing full doses of cyclosporine for more than six months.

Since the neupogen is elevating white cell levels and the red cell and platelet levels are back to normal, Dr. Walkovich and the other doctors have decided that Andrew can return to school. He is starting on Monday. His levels are high enough that his risk of virus or infection isn't much different than other children. It is time to integrate him back into normal life. He is very excited that he gets to return to Mrs. McDonald's class. He has been a little upset and moody when his two sisters are in school and he isn't, so this should help raise his spirits.

Andrew's next lab draw won't be until next Tuesday, October 12, and he doesn't have a hospital visit until Octobe 29, so things should be fairly quiet on the medical front for this month. Hopefully all goes well.